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Patient Stories

From California to Sydney and everywhere in between, your tales of courage, optimism and perseverance resonate with us. But, more importantly, they give hope to other people impacted by FSGS and Nephrotic Syndrome.

We’re here for everyone impacted by these diseases no matter your age, gender or where you are in the journey. Are you a newly-diagnosed adult patient? Perhaps you’re the parent of a young child waiting for a transplant? Maybe you’re a teen in remission and feeling good? No matter who you are or where you live, we invite you to share your story and help others feel less alone, more inspired and more empowered in their journey.

share your story

Nephrotic Syndrome

Ayeza B.

My daughter’s name is Ayeza. She was diagnosed with CNS at only 1.5 months old. The doctor told us that children with this disease only survive until they are maximum 2.5 years old. Immediately they started her on medications and at the age of 4 she diagnoses kidney disease. And she was referred for dialysis. After 4 months of dialysis, we started her kidney transplant process. As her father I am in hope that she gets the kidney transplant without augmentation. Once the reflux clears up, I will hopefully be able to donate my kidney to her in the meantime ... Read more

Nephrotic Syndrome

Sawyer R.

Sawyer’s journey began at the tender age of 4, marked by distressing symptoms that initially led to a diagnosis of constipation. However, a persistent feeling urged her family to delve deeper into her health concerns. A pivotal moment came when Sawyer’s body began to swell, prompting urgent action and a trip to the local military hospital ER. In the wee hours of the morning, the diagnosis was confirmed: nephrotic syndrome. Suddenly, an article glimpsed online became a roadmap for their journey, a journey filled with uncertainty and determination. Through every trial and triumph, they’ve emerged stronger, united in their fight ... Read more

Nephrotic Syndrome

Christopher S.

My journey with kidney disease has been a long one, full of trials and hope. And I have lived through almost every stage of kidney disease there is...

Nephrotic Syndrome

Keyaira S.

At the age of 11, Keyaira was diagnosed with Nephrotic Syndrome. Before being diagnosed, she was a healthy child...

Nephrotic Syndrome

Emma Kate C.

When Emma Kate was almost 3, we noticed her swelling. Then, she ended up getting sick for days, not eating, or going to the bathroom. Thankfully, her doctor was attentive to what I told her...

Nephrotic Syndrome

Tyler and Jaxon L.

Tyler and Jaxon began their journeys at birth but went undiagnosed for their first few years of life. We noticed swelling around their eyes and bellies but it was always considered to be related to seasonal allergies...

Nephrotic Syndrome

Cooper C.

During the Spring of 2010 (March 1), Cooper’s mother (Heidi) arrived home from a business meeting and had been gone 2-3 days. When she left, Cooper had a viral infection, runny nose and cough...

Nephrotic Syndrome

Morea C.

Morea Cummings presented with a virus at just 7 weeks old. While in the hospital, it was discovered that she was spilling protein in her urine...

Nephrotic Syndrome

Jordan J.

In 2012, at the age of four, Jordan James was diagnosed with Nephrotic Syndrome. He was living a "normal" life in Los Angeles, California until he started experiencing swollen eyelids...

Nephrotic Syndrome

Paige T.

Paige was diagnosed with Nephrotic Syndrome in Sept. 2010. She was only 3 years old and prior to this time, she was a healthy little girl...

Nephrotic Syndrome

Nolan B.

Nolan was born prematurely at 34 weeks by emergency c-section. At the time of his birth, Nolan was experiencing pulmonary hypertension...

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